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CLL – Five Years and Counting

CLL make blood cancer visible

I was initially diagnosed with CLL (chronic lymphocytic leukaemia) in around May 2014, which means I have now been on what is known as watch & wait, sometimes called active monitoring and also known as watch & worry by most of us living with CLL, for over five years.  What this actually means is regular blood tests to see how the leukaemia is progressing, if it is progressing, and whether any other symptoms have arisen.  If they have, for example, some mix of the following symptoms; strong night sweats over a period of at least two weeks, repeated infections, swollen lymph glands which stay swollen, enlarged spleen, then treatment may be indicated.  I haven’t reached that stage yet, but will eventually.

This helps me survive. Not funny, but true.

If you met me you would think there was absolutely nothing wrong with me.  Unless you met me on an aeroplane, in which case you would see this (picture on right).  It’s necessary to avoid infection from the recycled air on all flights.  I know from experience I get ill, and that was before CLL was diagnosed!

It’s frustrating though; I had people taking the pee out of me when I posted this image on Facebook, which I did to try and pluck up the courage to wear it as I knew that people would react to it.  As a result of the comments, I could not wear it for my initial flight and of course got very ill at the other end which nearly spoiled my trip.  I wore it on the flight back and was perfectly fine.  My lesson was learned, but I doubt the people on the flight did if the comments from friends and family were anything to go by.

It hurt, to read the humour at what I looked like whilst the understanding that it would prevent my possibly needing chemotherapy or other forms of treatment for some time to come was completely lacking.  I understand though, that this is due to a lack of knowledge and information about what is the most commonly diagnosed form of blood cancer in the UK.

I help to administrate (and get a lot of support, advice and community from) a CLL Facebook support group for UK patients, and I asked if they could let me know what one thing they would like people to know about CLL. Ages given where mentioned.

Tina, 47 –  “I would like muggles (people with no CLL awareness) to know is that the risk of infection is very real and we have to take precautions, so whilst a lot of us may look healthy, we are not and we have to avoid illnesses.” (yes, that’s me, I started it off as I’m a firm believer in if you ask others to do something you should be prepared to do it yourself).

Diane – “I wish they could understand how tired you get, even though you usually look healthy.”

Veronica, 64, W&W 4 years – “Wish doctors etc. would recognise that fatigue is REAL (capitals by Veronica) and often debilitating.”

Jason – “Those that have heard of CLL think it’s a good cancer as they have heard or read something along those lines.  I can include my wife in that as the only appointment she attending my dx the doctor told us that and even though a few months later I got told I had bad markers (17p in my case) which complicates things everyone thinks all is ok and I will live forever – not against doctors telling people on dx that it’s a good treatment because that is a good way of breaking bad news but more needs to be put out there that there are many other forms of CLL which are not good.”

Tom – “The fatigue/tiredness thing is a problem and the fact it comes out of the blue and stays for a while is too.”

Louise C – “Tiredness and fatigue, it’s the pits”

Paul – “the effect it has on our loved ones.  Those of us living with CLL “feel” the effects, but our loved ones have to cope with the fall out and yet provide us with so much love and support.  In a way their challenges are worse (if that is the right word) than those with the condition.”

Wendy, 5 ½ years W&W – “The tiredness for me …, also people saying but you haven’t had treatment.  It took me a while myself getting my head around it has to get worse before treatment is offered.  It’s the opposite to other cancers.”

Denise, 3 years W&W – “it was the sudden impact of being diagnosed… and the effects on my immediate family.  Staying away from infection and getting friends or others to understand is very hard.  I also have fibromyalgia and chronic fatigue syndrome so it’s really hard for me to know why I’m so fatigue; could it be the CLL?  I’m never sure.”

Mick – “Fatigue.”

Shelley, 52, 2 years W&W (husband also diagnosed, 8 years W&W) -“ People think we don’t or can’t possibly have ‘serious cancer’ because we aren’t rushed into treatment.”

Louise L, 49, 2 years W&W – “It’s the fatigue that’s the biggest thing for me, I had to give up work because of it.  And that people keep saying ‘why can’t they just give you chemo’, I get fed up of my own voice explaining it to people.”

Janet – “Fatigue is the worst when you say you’re tired and people think sleep will cure all.  I feel as though somebody’s turned the power off … the worst comment ever ‘you don’t look sick’.”

Heather, 56, 1 year W&W – “for the consultants and doctors not say … CLL/SLL IS NOTHING!! Not only its affecting fatigue levels and infection risk but the mental effects on us knowing that cancer is running through the whole of your body can have … already had a breast cancer diagnosis 3 months after [diagnosis with CLL] and fear another type coming at any point!”

Jean – “the fact that after treatment everyone assumes you are cured which isn’t the case, we still have to be monitored and have to still live with watch and wait as before treatment.”

Mike – “I have had one or two quite negative responses.  One person even started asking questions that seemed to be bordering on “I don’t believe you really have cancer.”  Oh, and there’s the “at least it’s not serious cancer”.  For now, I no longer mention it to anybody.”

Jillian – “for the 4 years I was on W&W I never actually felt sick, potentially a bit more tired than I should have been.  To some extent I felt like a fraud.  It was only in the last week or so before my treatment that I really felt pain and tiredness, and then I succumbed to a rotten cold that delayed my treatment.  I consider myself really fortunate to have had such a positive experience.”

Phil – “The fatigue.  Then helpful idiots saying ‘you should have gone to bed earlier’.  If I went to bed much earlier I’d still be at work!”

Lynne, 12 years W&W – “the fatigue, and catching cold after cold.”

Louise K, 53, 4 years W&W “when people tell me I have a lucky cancer (is there such a thing?)”

Kenneth – “the mood swings and pain.”

Gillian – “when people say you look so well.”

Bernie – “people saying “you look well” when you just want to crawl into your bed and sleep forever.”

Elizabeth – “if I had a pound for every time I heard [you look well]!!! I find it so annoying and all I can think of to say is “appearances can be deceiving”!!! How can people judge how you feel when they’re not in our shoes?”

Joann – “I would like the muggles, doctors and specialists to recognise and raise factual evidence that even people on W&W have real debilitating symptoms for example fatigue, night/day sweats and joint aches to name a few, and for them to realise that this condition affects people’s everyday life.  People in this group have a real struggle when it comes to things like claiming for PIP or free prescriptions when in my opinion it should not be questioned; this illness is real and should be treated accordingly … even professionals think that if you look okay then you are when you’re really not.”

Mary – “my initial issue was to be informed you have CLL and then told that your first consultant appointment will be in four months’ time.”

Terry, 12 years W&W – “I feel like a fraud because I am not sick enough to receive treatment but still feel the effects of CLL every day.  I cannot commit to things because of the fatigue, it feels like someone has pulled the plug out.  I work when I can but it can knock me out for days.  Sometimes I feel like I am living half a life because of the amount of time I have to rest, it is so frustrating.”

Diane – “For doctors and consultants at hospital to actually be aware of and recognise what the main symptoms are, never mind the list of other things it does to your body.  And to recognise how difficult and frustrating life becomes for those with CLL but also difficult for the partner/relative etc. watching the one they love being robbed of aspects of their life, things that were ‘normal’ before but now so different.”

Mark – “I have had cancer twice and on balance dealing with CLL is somewhat harder because being treated the first time was done within 9 months of diagnosis with just the follow-up appointments afterwards.  [with] CLL many of us wait of years before treatment commences and that in itself is mentally wearing which only adds to the fatigue and people forget your life-threatening condition.
I also think there is one other point to consider and that is the loneliness of the disease.  Coping with feelings which can crop up at any stage and for those of us with nobody to share our woes relating to the disease, and indeed attempting to begin a new relationship with someone and you have to tell them about your unwanted passenger.  In truth, I feel like a leper at times and I can’t do a thing about it.”

Lisa – “You look really well so you can’t be sick so it can’t be serious.”

As you can see, it’s not just muggles but also medical professionals who have a lack of awareness of CLL.  We are at a higher risk of developing other cancers such as melanoma (skin cancer) or breast cancer.  GPs will often have minimal or no understanding of the implications and experiences to be expected with CLL.  We have to be our own advocates and push for what we know is best practice such as annual flu vaccines, five-yearly pneumonia vaccines, priority patient status for immediate GP appointments if we have an infection as we can develop sepsis incredibly quickly, and so on.  There is no mental health support offered or available for the majority of us.  Treatment and monitoring even in watch and wait varies enormously according to patient experience and geographic location.  It shouldn’t.

leukaemia symptoms

Please share this blog.  Please let people know about CLL and blood cancers, and please be patient and understanding with people, no matter who they are, as you never know what they are dealing with.

For Blood Cancer Awareness Month, September 2019.
#BloodCancerAwarenessMonth
#CLL

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“Accessibility” Means What, Exactly?

I was recently involved in a surprisingly heated (not on my part, I hasten to add, virtuous paragon of non-excitableness that I am) discussion with regard to a friend who setting up a new business (https://purplecoqui.com/ – I so want to go!) arranging bespoke tours of Puerto Rico, and she states on her website that themed tours (guided or unguided) can be arranged to be fully accessible.

Umbrage was taken by a non-disabled person with regard to use of the term “accessible” because it did not state “wheelchair accessible” but did use the word “disabled”; this was taken to be offensive by said commenter.

Check your privilegeMy friend had surveyed many people with disabilities before this word was chosen, from people with disabilities, and this term was not deemed offensive by them (I include myself in the ‘them’).  Much discussion ensued (by which I mean one-sided, not-listened-to, not-heard commentary from said umbrage-taker) as to the terms, and it was impossible to get UT to understand disabled does not mean wheelchair user.

This made me wonder; how many people assume that disabled access means wheelchair access?  Far too many if my and others experiences of living with disabilities are taken into account.

For example, on the London Underground the accessible lifts are generally placed a long way from each other, necessitating long walks to access them.  Fine if you are in a wheelchair and have sufficient energy and do not have chronic pain, and are comfortable getting to them.  Rubbish for everyone else.

Another example; I attended a show at the O2 in Greenwich, London, for which we used the disabled parking.  Disappointingly these parking spaces are at least ½ mile (600 metres-ish, I’m estimating) from the entrance to the complex.  I have chronic pain mobility issues and use a walking stick.  I struggle to walk distances.  By the time I reached the complex I was very angry, in a lot of pain and almost in tears.  Yet this is considered to be a decent provision of accessibility for disabled people.

Disabilities-what they look like

Disability not discriminate; people do.

The problem is that it is assumed by a huge amount of society including those who are architects of society (in every sense of the word) that accessibility means wheelchair accessible.  As a result, when accessing booking for tours, holidays, buildings, public and private transport, anywhere really, the assumption is in order to make something accessible you need to make it accessible to wheelchairs.  Yes, you do, and everything should automatically be created to be wheelchair accessible, but that is not the only accessibility that is required.

Those with chronic pain need short distances or some form of transport to get between long distances.  Moving walkways such as at airports are fantastic.  On my recent trip to NZ (I know, I’m a lucky gal) I found a fully accessible glow-worm cave tour but as you can see, this still says wheelchair accessible.  Happily, they have thought of other problems and provide regular stations where people can sit and rest, and extra wheelchairs for anyone who has mobility problems during the tour.  I was incredibly impressed by the tour, yet did mention how the wording did not help those of us who have disabilities but do not use wheelchairs.

Accessible is a catch-all term which all too frequently excludes the myriad forms of disability that don’t require wheelchairs.

To be truly accessible, the myriad effects disabilities can have on individuals need to be taken into account.  This does not mean a list of all the possible disabilities that might exist, this means clarifying the accessibility issues that might cause problems to people with myriad forms of disability.  Chronic pain can have many causes, as can mobility problems, but the effect is the same and therefore the solution would also be the same.

Similarly people with sight or hearing problems can be on a sliding scale and/or caused by many different problems, but in order to make somewhere accessible it is the sight/hearing difficulty that causes the problem that needs to be addressed, not the underlying cause of the sight problem.

So how should accessibility be defined?  I have a few suggestions:

  • By not assuming wheelchair accessible is all that is needed, and by building in total accessibility for all manner of symptoms at the start of any project.
  • By contacting disability activists and groups run by those who experience the symptoms for comment and advice at the inception of projects.
  • By policy that ensures all projects should be fully accessible at inception.
  • By changing social attitudes towards those with disabilities.

We are all (hopefully) going to get old.  We are all going to develop problems with accessibility in some form or another.  Address the issues now, don’t play catch-up, it’s too easy then to blame costs for denying those of us with disabilities the possibility of participating in society to the best of our capabilities and potential.

No Access

I have written before about how people with disabilities are disabled by society not being accessible.  This can only be addressed by focusing on the actual problems causing accessibility issues.  The definition which has been adopted by the dominant able-bodied society needs to be changed, otherwise millions are still going to be disenfranchised, because they don’t have the right sort of problem.

For further reading on disability issues (activism and experience), try these blogs:

https://crippledscholar.com/

https://spoonshortagesue.wordpress.com/

http://www.francescamartinez.com/en/d1/Enter-Site-

https://dpac.uk.net/category/disability-activism/

https://www.disabilityrightsuk.org

Boris Johnson: Not My Prime Minister

Boris “Bloody” Johnson is now officially (well, as of Wednesday) the UK Prime Minister, elected by 92,000+ of the eligible voters who are members of the Conservative Party.  87% of the eligible voters voted, he beat his nearest rival by nearly double the amount of votes available.Boris Bloody Johnson

What does this say about us?

Well, it says that we are perfectly content for a proven sexist, racist, xenophobic, homophobic, Islamophobic, fake-buffoon (he is not an idiot and it would be foolish of us to think he is) Bullingdon Boys Club, Old Etonian WMP*-poster boy to be the leader of this country.  He has put UK residents in active danger with his ‘quips’, his period as Foreign Secretary was appallingly racist and full of ill-judged comments, and he has been sacked more times from newspaper publications for lying and ineptitude than anyone who was not an old boy would ever be allowed.

None of this was a surprise.  All of this was well known before he even stood as potential leader of the UK.

He will get on well with Donald Trump, the disaster that is leading the United States of America.  We need to keep a closer eye on the NHS than we ever have before.  He is not above further privatising by outsourcing and deliberate underfunding to decimate what we already have.

He may be Prime Minister, but not in my name.

What can we do?  Nothing more than continue to fight the bigotry he and his ilk allow to suppurate throughout our society.  Strive always to be a good ally to those who are not of our particularly identities, and fight for the rights of everyone in the country.  It is no coincidence that since austerity measures have been brought in, and with it the furthering of divide-and-conquer capitalist activity, bigoted attacks have increased.  Thoughts and prayers are not going to save us.  Continued proactivity in whatever way you can is the only thing we all can do.  Find out what your MP actually does, and how they vote, and hold them to account.

I will be observing a short period of mourning, as I am finding my mental health badly affected by the knowledge that there are people who really do think oppression of the people by arbitrary category is a good idea for government.  I try to think the best of people, but it’s hard when this happens.

I’m thinking of fluffy kittens and rainbows, and this too shall pass.

Boris “Bloody” Johnson.  Really?  He is actually the worst of the two options, but that’s just asking if arsenic or cyanide is your preferred after dinner drink.

But Boris “Bloody” Johnson… Not in my name.

Party official websites:

Alliance Party of Northern Ireland (Northern Ireland https://allianceparty.org/)

Conservative Party (Tories https://www.conservatives.com/)

Democratic Unionist Party (Northern Ireland http://www.mydup.com/)

Green Party (England and Wales https://www.greenparty.org.uk/)

Labour Party (http://www.labour.org.uk/index.php/home/)

Liberal Democrat Party (http://www.libdems.org.uk/)

Plaid Cymru (Wales http://www2.plaid.cymru/)

Scottish Green Party (https://greens.scot/)

Scottish National Party (https://www.snp.org/)

Sinn Féin (Northern Ireland http://www.sinnfein.ie/)

Social Democrat & Labour Party (Northern Ireland http://www.sdlp.ie/)

UK Independence Party (UKIP http://www.ukip.org/)

Ulster Unionist Party (Northern Ireland http://www.uup.org/)

*White Male Privilege

BoJo Not in my name

I’m Sorry I Couldn’t Save You

I’m Sorry I Couldn’t Save You

 

I had a dream about you last night.

I dreamt of your face.

Gazing up at me.

Sweet smile and beautiful eyes.

Smiling up at me.

And I couldn’t save you.

 

I dreamed I tried so hard.

I asked you to come with me.

But you wouldn’t come.

Trusting face and open heart.

I couldn’t persuade you.

And I couldn’t save you.

 

I knew it would not be safe for you.

I knew you would succumb.

So loving but so tortured.

Heart so flayed and clean.

Torn by your youth and truth.

You thought you’d disappointed.

And I couldn’t save you.

 

I pulled you up to move you with me.

But you stayed and laughed.

Preferring to disappear inside.

I loved you and couldn’t stop you.

You chose the needle oblivion.

My friend who couldn’t love himself.

And I couldn’t save you.

 

I’m sorry I couldn’t save you.

I dreamed of you and tried.

But you could not step outside your pain.

I dreamed of you and cried.

Your pain overruled everyone.

Your pain hid love from your soul.

And I couldn’t save you.

 

© Tina Price-Johnson

28.01.2016

Written in memory of a friend who passed long ago, and whom I think about often.  Addiction is a symptom, the cause of which is varied, but as long as causes are not addressed, the disease will prosper. In memory of NP.

Collaborating Creatively: Rushey Green Timebank

I have told both my beloved readers before about the joy of being a member of Rushey Green Timebank, and I can scarcely believe I have been an active member for 8 years now!  I offer my Wills and Probate expertise at our Bring & Fix’s and have been on the receiving end of fantastic gardening assistance and mending and adjustment of clothing from other members.  We swap hours of help with each other, it’s fabulous!

Well, it’s also about building community and a huge part of that is getting together with people of similar interests.  For me, that has meant the creative group.  We have held a few poetry/prose/music nights with choirs, readings, and artwork displayed for all members to enjoy and hopefully be inspired by.

Last night was a creative collaboration evening, sprung from the febrile fertile minds of those of us who attend the creative group (mostly writing but it is hoped musical RGTB members may arrange their own group at some point).  Exercises were chosen by our member Pete, who organised the gathering, but we can all organise get-togethers for interested parties.  The Timebank is there to support.

Timebank event 10.08.2019My goodness, it was enthusing and it was fun!  Five of us attended and exercises were given to stimulate our minds into working together to create a unique piece.  I also learnt what an Acrostic Poem is (one which forms a word with the starting letter of each line, going downwards).  I turned up at the meeting suffering badly with chronic fatigue, and left just as tired but with a mind filled with inspiration.  I’m ready for our performance event on 10th August 2019 – come along if you can.

If there is a Timebank near you (have a google) then I strongly advise you to join.  It builds community like nothing else I’ve come across.  I have been involved since April 2011 and have yet to find a downside!

For the interested, here is what was created last night, in just 90 minutes:

A STORY FROM GIVEN WORDS – Axe, hammer, a length of rope

By Hanneke, Michael & Tina

The shopkeeper looked up at the sound of whistling to see the customer walking towards them, with an exaggerated air of nonchalance.  They started to browse the shelves and the shopkeeper watched carefully.  The customer pulled out different types of rope, pulling and testing the tension, finally selecting a robust one.

“I’ll have 6 metres of this,” the customer said.

The customer then ran their fingers down the edge of various axes, selecting a large double-headed one.  Finally the customer hefted several types of hammer, pounding them against the palm of their hand until they found one sufficient to their purpose.   The customer took their items to the counter.

“Got everything you need?” the shopkeeper asked.

The customer smiled. “I think so.”

“Big project planned?”

The customer smiled again, knowing there was no reason to say what they might be intending to do with their items.

“How much weight do you think this rope can take?” the customer asked.

“Depends what you want to do with it,” the shopkeeper answered.

“I’m about 12 stone.  Do you think it would take my weight?”

“Ummm… Should do,” the shopkeeper answered.

“So it would take your weight then?”

“Yes, should do.”

“And the axe, sharp enough to cut through anything?”

“…yes” the shopkeeper answered nervously.

“This hammer seems pretty lethal too, right?” the customer laughed to themselves.

“Err… that’ll be £50 all in”.

“Here you go, cheers mate.”  The customer went to pull out a card, shook their head, then pulled out some notes instead.

The shopkeeper put the items in a bag, hoping their hands didn’t shake too much with the nerves that ran through their body.  They passed the bag over, saying “hope the project goes well.”

The customer walked out the door, pausing to turn around and say “I hope my kids like their new treehouse, the swing should be a real laugh!”

 

By Julie & Pete

He walked into the shop carefully looking out for security cameras.  He pretended to browse but he knew the items he wanted to buy.  Carefully chosen, he paid using cash, as he would not be identified.

He felt euphoric, he had been planning this for months and now it was about to happen.

He left the store, carrying his bag of items.  His car was parked around the corner, again avoiding CCTV cameras.  He stopped briefly at the boot, contemplating whether to open it but decided the risk of exposing the cargo within was too great.

A couple of hours later he was at his destination, a wood with a broken down shed amongst the trees.  He pulled the body out and hung it from the rafters.  Then he chopped the wood up and hammered the door shut.

His wife had told him to get rid of the blow-up doll, but he knew he would come back later for his pleasure.  But then he realized; he’d forgotten to buy a pump and the shop was now closed!

 

ACROSTIC POEM – from the word “together”

By Julie & Pete

Time passes by so swiftly

One hour seems like a second

Gone like an old memory

Each moment spent in the company of others

Ties the bonds between them

Heavy is the heart that stands alone

Ever to try and clutch at the invisible threads

Running through the fabric of life

 

By Hanneke, Michael & Tina

To find another in a lonely hour

Or to lose oneself in the dark of the winter soul

Gold for Arsenal!

Everybody cheers

Team wins and we shout our joy to deafen ourselves

Help is on the way

Enough to keep us going

Resting quietly alone until we join up again for the next fixture

 

PICK A WORD FROM A HAT, ONE FOR EACH GROUP MEMBER

By Hanneke, Pete & Tina

Words picked: Alphabet, Petrichor, Saxophone

Open plains; a house is on the horizon with a porch.  It has not rained for weeks, in the middle of summer.

The people were desperate to quench their thirst, to water their crops, and they called on the music man to save them.

The music man had spent several years learning to play Josie, his beloved saxophone.

He was known for calling in the crowds with Josie, maybe now she could call in the rain?

He stilled himself, centring his focus until all that existed was Josie and the sounds they could, they would, create together, and he kissed the mouthpiece with reverence, then blew.

Josie sounded beautiful as always and the music man started running through the alphabet of notes as he fingered the keys.

On a long G major clouds broke in the sky and it began to rain heavily; the music man and Josie left the porch and walked into the open as the earth shared its revelation.

Thick drops fell to the ground and the dust rose up to meet it, thudding life back into the earth and renewing all who bathed in nature’s shower.

The music man revelled in the rain but realised Josie would not like it.  He stopped playing and placed Josie back in her case.  As soon as he did, the rain stopped and left petrichor in the air.

RGTB logo

Premature Obituary

26 December 2101

Ms Tina Price-Johnson passed away at the age of 129, an age she never expected to see, managing as she did to span the change of two centuries and lucky enough to remember the turn of both.  She would have been thrilled to make it to one last Christmas simply because she was a person who enjoyed giving gifts and making people happy, if she could.  Plus, she was excited to see what people would give the woman who lived way too long not to have all she needed, if not all she wanted.

I love that cloak so much...

LSH with Tina

Tina leaves behind a menagerie of cats (56 at last count) and a long-suffering husband (LSH) who according to his promises will shortly follow her into the grave having fallen on his sword, originally worn at their wedding a mere 94 years earlier.  Given LSH went utterly demented 25 years earlier Tina will not hold him to his promise; he continues to play Assassin’s Creed: GoodGriefNotAnotherOne on a daily basis whilst swearing at the screen and wearing most of his food on his shirt.

Tina will be missed by her parents, identical twin sister, older brother, nieces and nephews, her godchildren (referred to always as her odd-children as she was an atheist who believed in humanity), the rest of her family, and her many friends many of whom she has known since they entered the world, all of whom outlive her.  She is hopeful that her own activism and humour has been in some way influential on her loved ones.  Tina believes she is lucky in that she is the first family member to go so doesn’t have to do all that grieving herself, that’s way too much emotional labour.

Tina was a prolific writer in her lifetime.  Her blog is one of the longest to be in existence on the internet, and ever the technophobe she was always one of the last to update her online presence to the most effective way to communicate.  She may have been a prolific writer but she was not prolifically read.

Tina’s blog had always been more of a way of marshalling her own thoughts and a way challenging herself to ensure her own argument stood up in the face of onslaught, in her view.  One of her proudest moments is when a reader contacted her to say her blog had been instrumental in helping the reader successfully challenge the sexist and racist opinions expressed by the reader’s parents.  Tina had changed minds.  Well, mind.  One at a time will work.

Tina wrote a novel called The London Fairy, an urban fantasy with a feminist twist, with which she was pleased but which she was convinced would never set the literary world alight.  It was published and became a massive success winning both the Nobel Prize for Literature and for Chemistry surprising no-one more than her, except the scientists who thought chemistry awards should actually be awarded for Chemistry stuff.  There was talk of bribery but nothing was ever proven, and the removal of the entire voting committee shortly after the awards were made is entirely coincidental.  Sadly it had taken her so long to write her novel she did not have time for a sequel.

Tina also wrote poems, some of which were deemed ‘good’ by those who loved her and were therefore in no way biased about the matter.

Tina did not have children, and the children she did not have are very grateful.

Representation Matters: It Will Save Lives

maternal rates of death by racial identity

Take your time to breathe in those statistics.  A black British mother is statistically more than twice as likely to die in childbirth or shortly after than the nearest racially identified group.  That terrifies me, and I am not within the racial group most at risk, I’m three below.  I also have no children nor do I intend to, which puts me at no risk.

Just as in any other social system, healthcare is imbued with racial disparity; in representation of medical staff, hierarchy and management, and in treatment of patients.  The difference in this case is that it endangers lives and as seen above, leads to death of those already discriminated against in so many other ways.

There are many reasons for the above statistic, not least is the fact there are medical conditions which are statistically more likely to present in particular subgroups; for example, those of African, Caribbean, Middle Eastern, Eastern Mediterranean and Asian heritage are more likely to suffer with sickle cell anaemia.  In the UK, patients are almost always of African or Caribbean heritage.

However, that is a statistical diagnostic prevalence, and not what I am talking about.  I am talking about the different ways in which racial bias in treatment can lead to undiagnosed illness and in the most extreme cases death of patients.  There is a gender aspect to this also, in the way women are mistrusted with regard to information about and complaints regarding their health and their treatment.  This is true both in mental and physical health.

A study published in 2008 found that children of Black or Hispanic/Latino heritage are more likely to be diagnosed with behavioural psychological conditions, whereas those of white heritage are more likely to be diagnosed with depression or substance abuse issues. Those of black heritage are also far more likely to be hospitalised as a result of those diagnoses.  The study concluded in part by stating:

“Findings from our analyses show that race/ethnicity is associated with specific diagnostic and disposition decisions in this PES, suggesting that race may affect diagnosis and disposition decision-making in pediatric PES.”

This correlated with the results of an early study of adults delineated on racial identity lines.

Other studies have found differences in diagnosis of and treatment for prostate cancer for those of different racial backgrounds with those of Black heritage being diagnosed at a far later stage than White patients.  Further studies have shown that pain management and treatment of chronic pain is different according to racial group, with Black people more likely to be seen negatively and either mistreated or not treated at all, or to be viewed with suspicion, i.e. the expectation of addiction issues and of the patient trying to get pain medication for this reason rather than for pain.

Implicit bias in healthcare professionals is not a new concept but it is still not being addressed and it is killing people.

Representation of those of different racial backgrounds is one way of addressing the matter, but that does not fully address implicit bias as we are ALL susceptible to this indoctrination no matter what racial identity we are privileged or unprivileged to present.  This is why women support sexism and misogyny, why Black people can uphold and perpetuate racial discrimination, why disabled people can exhibit discriminatory attitudes towards other disabled people, and so on.

However, representation is a massive step towards changing attitudes.  It starts with education at the youngest level, and requires a fully integrated policy of change.  I believe we need over-representation at first, with affirmative action to remove any implicit bias in the initial stages of study and employment and create the visual representation of those in deemed minority groups in all levels of healthcare work.  We need a deliberate policy of equality education at all stages of medical teachings, with emphasis on implicit bias and the dangers this poses to treatment and this means representation in the minority groups in teaching positions as well.  We also need an effective and proactive complaints system in place which supports those who are discriminated against.

I have made a complaint against a GP for his conduct towards me, and specifically for making racist comments whilst I was discussing a form of treatment.  He seemed to expect my implicit support as I am a white person.  The result of my complaint was that I was taken off his register and will never have to speak with him again, and he was given specific training with regard to his attitudes.  He still treats, he still sees patients.  I live in a borough which is very racially integrated (According to the 2011 census, of a population of 275,885, 53% identify as white and 47% identify as BAME).  I have no idea if he still holds racist views, or how he treats his patients.  The complaint went no further.  All I can hope is that he learned not to racially stereotype at all.

racism-apathy feesI am pleased to note my local healthcare trust has completed a study in this area and seeks to implement the findings.   This is a great step, and should be built upon; and I await the further study citing how effective such actions have been.

People are dying NOW.  It is up to all of us to fight for equality and if you are white-identifying and are not doing so, you are part of the problem.  It should not be in your name, either.

What’s In a (Spoken) Word?

I recently had the opportunity to hear the voice of a woman I respect, admire and hold a lot of affection for, for the first time.  I knew a little of her background and the possible influences on her accent that may have arisen in her lifetime, yet still I was surprised by her voice.  Why was that?  Why did I hold preconceptions and what was it about her particular voice that surprised me?  Accents are myriad as a step outside into any street will tell you; even in a village where no-one has moved in or out for about 200 years will hold people whose accents may vary, even slightly*.

tongue with world on it

My initial reaction was to question myself about implicit bias and presumption based on racial identity; mine and hers.  I think it is vital we hold such questions at the forefront of our analyses of social interactions; I have a lot of privilege in the eyes of society and hope to practice the self-questioning that I preach at all times (of course I fail occasionally, we all do and will, but that just means we keep trying).

Then I realised what it was with this particular accent.  To me, there were notes in her voice which reminded me, of all things, of the TV show “Murder She Wrote” and of the north New York/Cabot Cove accent I had recently heard being voiced by Richie Cunningham’s Dad, that chap from Happy Days, Tom Bosley.  The show is currently on endless repeat on one of the satellite channels in the UK.  To me, Tom Bosley was using a fictional accent as I’d heard him in Happy Days when he didn’t sound like that.  I am from the UK and my accent is Received Pronunciation with a serving of west country (according to m’beloved Sooterkin®), so I had assumed the accents I heard on the TV were fictional and not representative of real people.  I assumed all the accents this actor used were fictional!  As a result, I thought my friend’s accent was fictional until I heard it in real life, and it surprised me!

That got my little brain whirring.  The “little grey cells”, as Hercule Poirot in the guise of David Suchet (or should that be the other way round?) would say, in what (I now have no idea if it is) a Belgian accent.  How much influence does mass visual and auditory representation have on how we perceive and predict about others if we deem fiction to always be fiction?  If the accent we hear in a play is entirely alien to our ears, how can we know whether it is real or not?  If the accent is really bad, and I have heard some shockers (Dick Van Dyke, I’m looking at you, but affectionately because you are adorable), not only does it destroy the suspension of disbelief in the fiction I am watching/listening to but also makes me believe that such an accent cannot possibly exist in real life.  Rather than presumption of existence of such voices, I have a presumption of non-existence of such voices.

I have trained myself and continue to practice awareness to not to think of accents by racial stereotyping nor by gender inference, nor to make presumptions about voices which are marred by a disability of some sort.  I have not though of the bias that may exist in me as to whether an accent is a fiction or a reality.

This is important, because people are still very much judged on the sound of their voice.  In the UK, class is assumed and presumed quite frequently based on accent; if your accent doesn’t match your perceived class there is an inherent belief that in some way you are not truthful.

Those who identify as or identified as BAME will have their racial/ethnic identity questioned if their accent does not fit the stereotype of how they should sound, especially if they are second, third or more generation immigrants into the population in which they reside.  A white person will not be questioned unless their accent is very much identified with a BAME culture or racial identity.

Accents hold a lot of power in our world, subliminal influences on our attitudes towards and assumptions about those around us.  We are all constantly learning about ourselves and the world we inhabit, and until now I had not realised that even the basic belief in the veracity of an accent I may hold is influencing me, and that is something I will take forward when I question myself and address my own privileges.

Check your privilege bingo

By the way, the following may be the worst accent I have ever heard on a television show, and I’m apparently not the only one who thought this.  Oh Castle, how could you? https://www.youtube.com/watch?v=Ei1DnFdJrww

*not even remotely citable by any source, but it would be an interesting experience to find out the truth of it, don’t you think?

People’s Vote or a General Election

Only 15 days into the new year (as at the date of writing) and already 2019 looks to be shaping up to be quite the roller coaster.  It was never going to be an easy year, the Year of Brexit, but the government’s defeat yesterday in the largest loss suffered by UK government in over 100 years has thrown even more confusion over the whole situation.

I’m exhausted.  Ever since the electorate who turned up to the polls vote by 52/48 to leave the European Union, there has been constant argument about what deal to make, whether a ‘No Deal’ is feasible, whether the vote should be allowed to stand when it was such a narrow margin and more people didn’t vote than took part, and now whether to 2019 largest uk defeat brexithave a ‘People’s Vote’, a general election (or, maybe, both) or just to push on through with a No Deal and basically cross our fingers and hope for the best.

In my opinion the vote on whether to leave the EU was fundamentally flawed when both sides of the argument accepted it would be a ‘yes/no’ vote.  On the ‘Yes’ side there was no information as to what any likely deal might be and the electorate were comprehensively lied to by the Brexit campaign*.  On the ‘No’ side, we were led by Labour Leader Jeremy Corbyn who was already widely known to be a Eurosceptic, wanting to leave the EU for very different reasons to the ‘no’ campaign as the EU is very much a capitalist organisation and JC wants a more socialist cooperative EU, and as a result the campaign was not seen as enlivened or engaging**.

So now what?  There is still poverty increasing exponentially, death on the streets as a result of violence or apathy including right opposite our seat of government, increase in use of food banks, disabled people being forced into situations where their health is severely compromised by the dire welfare/social security system and suicide seems the only option – there is so much happening in this country that we forget because Brexit takes up all our time, media and patience.

We need a People’s Vote and this time it needs to be an informed one and the campaigns led by people who believe in the result for which they are campaigning.  May was a Remainer leading Brexit, Corbyn was a Leaver leading Bremain.  It was never going to work.  I like Jeremy Corbyn and a large amount of what he stands for, but on this we disagree.

If we do have a people’s vote it must be truly informed.  We cannot have a ‘Yes/No’ vote.  We need to have options, and we need to know exactly what the deal is that we would be voting for if we voted out.  We cannot have a vote without it being informed, as we are consenting to an action being taken by our government which will have long-term repercussions beyond our and our children’s lives.

We don’t need a General Election, not yet.  The country is not ready for that, and it won’t solve the problem as it will be an election based on the EU issue.  The country and we the people deserve and need so much more than that.  We are living in a situation where membership of the EU is the topic that would override all other considerations.  Our people deserve more than being an afterthought to a trade deal.

peoples vote

I will be watching with interest and more than a little trepidation.  The next few days and weeks will be a rough ride.  But then again, I think this country has got used to life being a rough ride now.  We need a people’s vote.  Then, after this has all settled down a bit, THEN we need a general election.  But we don’t need Theresa May, whatever.

So, politics, bring it on. Again!

 

* https://www.newstatesman.com/politics/uk/2016/06/how-brexit-campaign-lied-us-and-got-away-it
* https://www.theguardian.com/politics/2018/jun/23/brexit-demonstrators-london-we-were-lied-to
** https://www.theguardian.com/politics/2016/jul/05/how-remain-failed-inside-story-doomed-campaign
** https://www.forbes.com/sites/andrewcave/2016/06/27/how-europe-was-lost-five-ways-the-remain-campaign-failed-in-britains-european-union-referendum/#26058b5b19db

A Shattered Dream

BSLIt has been a long-cherished dream of mine that I would learn and become able to communicate in British Sign Language (BSL).

We all have the potential to lose our hearing to a degree and it is very likely we will as we get older, so I thought it would be a useful tool in my personal and work life.  I passed my BSL 101 exam without too much hardship, as I was studying with my Sooterkin™ and we could practice together.  It looked quite positive, and as a person who ‘collects’ exams, I need a measure by which I can assess my progress which is external.  Exams provide that measure, and as applied to myself I have totally bought into the ‘piece of paper proves I succeeded’.  Only applied to myself of course, I do not apply that measure to anyone else.

However, I have now attempted BSL102 twice; the first time I had to leave the term early due to an inability to find the balance between health and life, and this time I was taken aside by the tutor and gently and kindly told that I simply wasn’t to a level where I would pass the exam.  My forms were too untidy, and my grasp of grammar was not good enough.  I can hold general basic conversations but I cannot pass the exams.

I have failed, twice, for many reasons, not least of which I had no-one to practice with and so the one hour a week I was with others also learning was not enough.  Practicing any language alone is difficult, and I have always been ‘no good’ at foreign languages (my words).  BSL may be in English, but the order of words is distinctly Germanic, and I can learn and ‘speak’ but my receptive skills were bad.  This is the same for all my attempts at learning foreign languages.

I so desperately want to be able to speak another language, any language.  I don’t want to be that English person in a foreign land, desperately trying to be understood by speaking English very loudly in a staccato voice, twisting my own language in some ridiculous attempt to be understood.  I don’t want to have to exclude anyone who cannot hear properly or at all, or be excluded myself, from any social or other type of group in which there are people who are hard of hearing.

I tried, I really did.  I sought out Deaf Clubs, joined Whats App to join in the class group, asked if people were interested in meeting up outside of class, practiced at work, adjusted the time of the class so I could attend straight from work instead of having to go home then out again and thereby reducing the spoons used, pre-dosed on painkillers, went early to practice-chat to the class in the pub before we went to the lesson, I even missed out on the 20th anniversary party of my volunteer association Rushey Green Timebank (https://www.rgtb.org.uk/) to attend the extra lesson I paid for to prepare for the exam.  All to no avail.

Quite simply, I am just not good enough to pass the exam.  I can hold a conversation at a basic level, count up to one million, describe people and give and take directions.  I just cannot pass the exam, and I feel like a failure.  I am not a failure though.

I have learned more than simply very basic BSL.  I have learned that I don’t need a piece of paper to ‘prove’ that I am worthy or have value.  It’s taken me a very long time to learn that lesson and apply it to myself.  Why is it that we can learn and understand such ideas and apply them with love to other people, but not to ourselves?

phoenix rising

Phoenix Rising by ~spawntempest on deviantART

I failed, but at least I tried to the absolute best of my ability.  I’ll get over the loss of a dream.  I’ll concentrate on new dreams; I’ll bake; I’ll write; I’ll keep going.  I just won’t be having long conversations in sign language.  So I’m flipping the script.  I didn’t fail, I succeeded in learning something about myself, and isn’t that the best any of us can really hope for, anyway?

So like this picture, I shall wallow for a while but then, like the phoenix, I shall rise from the ashes of that dream to fly towards another.

Any excuse for a picture of a phoenix, eh?!